Saturday, August 25, 2012

We have an eater. After 3.5 years of tube feeding, my son is eating. I havent given him any tube feeds this week. I almost can't type that. He is skinny, and Im sure outsiders that do not know us or our situation will judge, ;oP but that is all good, because my son is eating. You know, with his mouth? He is eating pb&js, eggs, pasta, chips, rice, beans, on and on. He is still a packer, but he realizes this and is TRYING and is DOING it. I may need to give some tubies down the road if he starts to loose too much weight, but that is ok, the tube is on its way out & Camden reminds me of this daily. Today it was, " Im gonna get that tube out and your gonna throw it in the trash." Amen, lil man.

Monday, August 20, 2012

Camden's incision looks perfect. I haven't blogged because I have been busy and for a few weeks I felt bummed and didnt want to post bad news. He had been choking pretty badly up until a week ago! He is now eating and choking periodically, but so much better! I believe the surgery was a success for the most part and the choking is caused by his esophagus being "smashed" for so long. Well, that is what MY thoughts are on it, but tomorrow we will go see Dr kays and hear his. ;o) Now that we have the physical part "fixed" we have to start tackling the emotional/mental part. Any parent that has had a tube child will understand this. 2 years of NOTHING in the mouth, never learning to suck in those beginning months, then eating off and on this passed year etc, makes a difficult road in learning to eat properly. He wants something, then he doesnt. He cries. Then is happy about the same food he was just crying over. Then he packs it all in his mouth and cant swallow so mommy steps in and he is screaming that he wants to do it, because he can feed himself but packs the food all in at once. But, we are moving forward and that is what matters! Today I was thinking back to the videos I have of him screaming and crying at the food on his highchair. We've come along way!! I am thankful....

Tomorrow after we see Kays, we will see our new cardiologist, Dr Fudge (have I mentioned we love him?) for pre op for the heart surgery. Yep, I have scheduled the PDA repair for the 18th of September! I have been so ready to get these two surgeries behind us. We are almost there! Tonight I had to explain to Camden that he has to go see Drs and that there wont be any "hurts" this time. He sighed at me and said, "Mom! Im all healed up" There is definitely something wrong when you have to tell your 3 year old that he wont need an IV tomorrow and then watch him be so excited about that. Maybe the medical field is in his future? ;o)

He lost a few pounds but looks ok! He did have another extremely low HR last week. The cardiologist had told me to not startle him so I didn't. That was a long 2 minutes for me! =o( But after alarming 16 (yes 16 for the HR) he recovered on his own and it shot back up. Still not understanding all this, but oddly, it may just be Camden's normal. =oS Like I said before the low heart rates, according to the Drs are NOT related to teh PDA. I am trying not to dwell on them because they arent happening a lot, but it's in there...ya know, in the back of this mind of mine....mommas just cant help it.

About Me

Camden James joined our family on January 22, 2009, weighing approx 8-9 pounds and measuring around 22 inches with an UNKNOWN congenital diaphragmatic hernia. He joins his father, Marcus and I and three brothers and a sister.He has a trach and has been off ventilator since winter of 09. He gets all nutrition from a gtube.Life is not what it was, but we are adjusting to our new normal and trusting God as He continues to guide.... *Camden had his first "reherniation" diaphragm repair on Oct 30 2009, patched with gortex.* Some colon had made its way in chest cavity, behind his heart.*He was hospitalized due to his first sickness resulting from a cold(we think) for the first time on Jan 6 2010, at almost one year old.*REASONS FOR BLOGGING? Obviously to keep close friends and family updated but more importantly to help others with special needs children. Other blogs encourage me, give tips, and help me realize that I am not alone on this journey.I hope to do the same for them.*Camden was decannulated on June 2, 2010!!!*UPDATE for 2011 He finally took interest in eating, but it isnt possible due to his nissen surgery being too tight. New hurdle to overcome..